I have been part of a local mom's group for almost five years, and I have grown to count on my mama friends for advice and support through all of life's trials, and I've shared with them the joys of motherhood. When I told them the news that Max had Duchenne muscular dystrophy, I received an amazing outpouring of support, and I felt so fortunate to have these ladies in my life. However, as time has gone by, that support has waned, and my posts about various fund-raising endeavors, including Coach to Cure MD, were mostly unanswered. The straw that broke the proverbial camel's back was my post about Coach to Cure MD, in which I shared some deep feelings about Max's diagnosis. Out of 40+ members (and more than 20 views of my post), I received only three responses.
With tears in my eyes, I posted the following message:
I'm not posting this to make anyone mad or cause drama, but I have to tell you my feelings are hurt. Yesterday, I posted about Coach to Cure MD, and basically poured out my heart about my feelings about Max, and I received one pm and two responses (thanks to the three of you!), although there were more than 20 views. It's so hard to share feelings like that and make myself vulnerable, but I needed support, so I thought I'd try to get that support here. I have traveled through this mothering journey with many of you for more than four years, and to have such little response really hurt.
Perhaps you don't know what to say. I realize now in hindsight that there have been times in my life when I avoided someone who was going through a very difficult time, like a death in the family or a miscarriage, because I didn’t know what to say and felt awkward. Let me tell you, now that I’m on the other side of that scenario, I know how much it means to hear any words of support – doesn’t have to be perfect, and it doesn’t matter what exact words are used, just to have any response would be nice. For many of you, Max may be the only person you know with a serious disability -- actually, he's the only person I know as well. I don't quite know what I'm doing in these uncharted waters either, so maybe we can learn together.
There was such a lovely outpouring of support when Max was first diagnosed, and I still need that support, probably even more now that the dust is settled and I'm learning more about Duchenne. Perhaps it’s hard for people to make the mental leap to understand how devastating this disease is, since all you see now is a happy little healthy guy. He is just a regular kiddo, who is learning to sign, loves puppies and kittens, and is already quite skilled at taking his big sister's toys. And of course, I see that little healthy kid too, but my mind can’t help but go to the probably inevitable future, with steroids, slow but steady loss of the ability to move, wheelchairs, cough assist machines, breathing machines, etc., and all of the social issues he’ll face in school and in society at large, and the devastating fact that I may lose him before he reaches his 20s.
It meant so much to me to hear everyone say, "If there's anything I can ever do, let me know" when I first posted about Max. And I've tried to take you up on that offer, by asking for help with various fund-raisers over the past year, but there has also been very little interest. (Thank you so much to Heather and those who did donate or help pass the word along.) I understand times are tough, but even if you don't have $5 to give to Coach to a Cure, I would have so appreciated a "Good luck to ya" or a "Hey, I can't give, but let me forward it to my facebook friends, or people at work," or whoever, or just a message to hang in there, or you're praying for us, or something. (And some of you have indeed done that, and I thank you.) And maybe some of you are forwarding things on, or praying for Max, and I just don't know about it. If that's the case, I apologize. And a couple of you have been there for me emotionally in other ways, catching up at a lunch or talking to me at the Bounce, and that means a lot to me. And Kimberly, you know how much I appreciate having you as a friend and everything you do for us.
Perhaps people are uncomfortable being asked to give -- I know money is kind of a strange, touchy subject. But as I stated yesterday, the more I learn about Duchenne, the more frightened I become that there won't be a cure in time to help Max, and the more desperate I am to raise money. I hope you have patience with me for all of my fund-raising endeavors. I'm really not trying to be pushy -- there's just so much at stake.
Maybe it’s a mistake to post this, and maybe the hurt I feel towards the group is just a symptom of my anger and hurt about Max’s diagnosis. And you guys don’t “owe” me anything – I don’t want to develop an entitlement attitude, and I certainly don’t want Max to either. I just don’t want to bottle up all these feelings.
I hope I haven’t offended anyone. I guess I just wanted to make you aware of how wonderful support is, and how much I need it right now. My life has changed a lot in the past year, and since I’m working full-time, I feel that I’m losing contact with many of my friends, so the board is even more important for me. Sorry for the novel, and thanks for reading. ********************************************
I have actually received a huge outpouing of love from my friends. Many of them indeed said they just don't know what to say to me, and are not sure to act around me when they see me, and don't know how to respond when I post about Max. Others said they are forwarding info about Coach to Cure MD to everyone on their Facebook friends list and e-mail address books or making a contribution themselves. I feel that my message cleared the air, and I'm hoping my board friends will become comfortable around me again. I'm still the somewhat goofy mom they've known for years: now I'm just a somewhat goofy mom with a purpose!